Reflex Sympathetic Dystrophy (RSD)

[uphillbattle57]

Hi,

I am new to this site and my daughter was just recently diagnosed with RSD She dislocated her wrist during pre-season volleyball as a freshman D1 athlete. It has been a dream for her to play college sports.

She went through x-rays, MRI's which were negative. Never had any previous health problems. Just a few sprains, strains and hyper-extensions.

My BIG GIRL (6'4") middle blocker was diagnosed early and her team of doctors, hand specialists, neurologists, pain management doctors, and hand therapists are all very optimistic they since they caught this early she should make a full recovery. We owe a ton of gratitude to the team of doctors and support of her college and coaches.

She has been medically red-shirted this year which deflated her but after talking with her coaches, doctors and trainers she is a lot more positive.

I don't want to be a pessimist but I am a realist. My BIG GIRL has been told by her trainer not to do any research on the internet. She has only read the information that her doctors gave her. I have been the one to do the research and it is very overwhelming and scary.

She has had a triple whammy trying the adjust to a new school, trying to be a part of the team and trying to fit in with the girls (even though she can't play now), going to all of the practices, games and JUST WATCH others play the game she loves, in addition to trying to keep her grades up plus dealing with all that is involved with her RSD diagnosis (doctors/specialist appointments, out-patient nerve block procedures, physical therapy and chronic pain with sleepless nights).

BIG GIRL has a positive attitude and I encourage this. You never realize how strong your child is until they are faced with something like this. A positive mind set is important when trying to overcome any hurdle. I just hope this disease doesn't brake her spirit.

I would appreciate any advice. Are we setting the bar to high to think that she will play again.

My prayers go out to all of the people who have suffered the effects of this "KOOKY" disease.

Please respond I would love to know your thoughts!

Concerned MOM

[Mommy Peach]

Hello Concerned Mom,
I am also new to this, i was just DX 2 days prior to my 35th Bday, i have rsd in my right hand/arm and yes, it is "KOOKY" and evil. I have not slept through the night since July. Seems that your daughter has a good medical team, that is half the battle. My heart goes out to you both, my only advise would be not to give up. It is exhausing and difficult to process at first, but continue to work w/doctors and continue to research for her. Best of luck to you both.

[Layla]

Congrats that the drs. are on top of this. Two things I share. First Dr. Kirkpatrick in Tampa, FL works well with student athletes in regaining their lifestyle back. Please be aware until a cure is found this is a life disease. She can get it under control and in remission but it will come back and possible with a vengence. Should her pain become so severe in school that she starts missing, pls contact your school child study team so they can set up home tutoring and monitoring. They'll also schedule in-school assistance for getting around the building and addressing her classes and home schooling. There are online chats for her as well as you and your family. To know more about what is going on strengthens all in their understanding. Keep us informed.

[uphillbattle57]

Dear Layla:

Thank you so much for your information. It is kind of ironic that we were just in Tampa, Florida for a pre-season volleyball tournament my BIG GIRL'S team participated in just 3 weeks ago. Even though she had to stand on the sidelines and watch. Regarding specialists, I know of Dr. Eric Small in New York and another doctor who specializes in RSD who is from Philadelphia both are within driving distance. Right now she is in good hands at college but who knows where she will be this time next year. Hopefully, still in OHIO.

It is very hard for me as a mom. She is only 19 years old. I think I try to project to much into the future and wonder what kind of quality of life she will have. Should I be lining up doctors here locally now just in case she is only in OHIO the first year?

This week she has to go through a sympathetic nerve block, and is going to schedule a nerve conduction study. The doctors/coaches have medically red-shirted her and they want her to focus on her health first, school and then volleyball. She was deflated at not being able to play. They also have her scheduled to see a psychiatrist.

I have calls into my daughter's academic adviser to hopefully provide some assistance to her if warranted. So far she has been able to manage the pain and still go to classes. She has always had to work hard for her grades but she said that she seems to be struggling just in math this semester.

I know that stresses do have an effect on this disease. The funny thing is that most people are concerned about her but I think they just don't know how to respond. I know she feels alienated and very alone at times because she hasn't made any friends yet at college. She is putting up a brave front and says it doesn't bother her and that she is too busy. My BIG GIRL also has not been allowed to do any research at the request of her doctors, so it is difficult for her to verbalize her disease to others. I think that she is worried that people won't want to be around her because she is in constant pain and they don't want to be around someone who might be a downer. She does have the support of her family and her uncle who lives close by.

Do you know if anyone has any relief from acupuncture, aqua-therapy and YOGA?
I would also like to know if I could have the information to join a reliable chat room and also how to get access to one?

Thank you so much for your time and guidance. Hope to hear from you soon.

My prayers are with you also!

BIG GIRL'S MOM

[Layla]

Sounds like she is in good hands - Yoga, acupuncture, and water therapy are excellent choices as well as long as she can tolerate these. She is also a good candidate for Meilus Muscular Therapy, Cold Laser Treatments, and Fenzian treatments. A psychiatrist is very good as is a psychiatrist/psychologist to aid with depression and the mood swings she will undergo. You might consider purchasing thru RSDSA.org the book "Living with RSD." It's written in layman terms and will be helpful for all of you. All proceeds go to research and runs about $15. I know they monitor emails and such but I'll try to send thru here - you are welcome to contact me at any time. I'm here to help you both any way I can. [moderator note: e-mail address has been removed] - Layla

[Concerned Mom TOO]

Dear Mom

I am also a mom that's daughter was just diagnosed with RSD. She is in a D3 field hocle program in New Jersey. She rolled her ankle in preseaon and had it wrapped and sent back on the field. 2nd day wrapped tighter and sent back on the field. 3rd day only made it half the day and was sent into the training center and put on crutches. Trainers were GREAT..... Coach turned out to be a JERK!!! Made this kid walk all over campus with crutches and made her keep up with the other players. Said she was building up her upper body strength.

One week later a doctor from New Jersey came to the campus training center and diagnosed her with RSD. As with your daughter, mine also looked forward to the college game. She was already told she was on the starter even before she started preseason. Never been hurt a day in her life.

Now she is living on campus with an electric wheelchair in constant pain. We have the best trainers at the college. Luckliy it's one of the best training and rehab centers at any college in new jersey. She get therapy 4-5 times a week approximately 3-4 hours a day. Lots of medication that takes a toll on her. She is still on the team as is also going to medical out for this year. The coach is such an cold hearted person. She still doesn't believe there is anything wrong with her. I am considering filing charges on this coach for mental abuse. She has never once come in to look at her leg and ankle or even ask about her. The school is 100% behind my daughter and her disablitity. It's just hard for her to stay on the team with a creep like that running things. She even has her room mates beginning to ignore her and not invite her to team bonding things. It's a tough time but my daughter is strong and she will survive.

PS: My older sister has RSD and is now in a wheelchair for life.

Concerned Mom TOO
GOOD LUCK TO YOU TOO

[kellum]

Hi, My name is Elaine. I have had RSD for four years now. I was thrown from my horse, which shatterd my wrist and basically broke everything from the shoulder down. I have had the blocks in my neck and hip. At the time I was diagnosed I went through a series of the nerve blocks. I was then in remission for two years. Yes I am not going to tell you the pain is not horrible, everything you have read is true and more. The key is get the best doctors. You must realized it is you that choose them not them that not them that choose you. It works both ways. If you have a bad feeling about a doctor change. As far as the wrist, it will have to be treated like a new born baby. You have to make it strong but at the same tome you have to guard it from never being injured again. So P.T. is a double edge sword. RSD will eat away what you try to buid up. You have to get it set in your mind it will not win and you will beat it.

[G0J0G0]

[quote="uphillbattle57"]...

Do you know if anyone has any relief from acupuncture, aqua-therapy and YOGA?
I would also like to know if I could have the information to join a reliable chat room and also how to get access to one?

Thank you so much for your time and guidance. Hope to hear from you soon.

My prayers are with you also!

BIG GIRL'S MOM[/quote]


Hi uphillbattle57,
I hope ane pray that your Big Girl finds relief soon. I have read your story and am saddened that some one so young and vibrant has found this monster's realities. I will be breif as I know your time can be stretched rather thin at times. There is a good site that has a chat option and most of the time you can find some one home, RSDandyou.com... And to the treatment, aqua-therapy is great if the water is heated some, and some have found relief from accupuncture while some find it too painful to endure. The yoga can be a challenge for the movement is somewhat restricted with RSD. With all of this being so, she will have to keep the afflicted areas mobile to keep atrophy at bay as well as keeping up the bone density. I hope this helps and many blessings to you and your big girl, gojogo

[kellum]

I also am sadden to hear the news that anyone has been diagnosed with this. I was diagnosed three or four years ago. I was in remission for two years. I regret to say it came back with a vengeance. I am suffering more right now than I ever have. The bad part is people just do not understand because I am not in a hostipal and there is no bandages. I have lost all my friends and I feel like my husband and family is growing wearing of my complaints. I am living a nightmare and there is no cure. Right now I feel helpless and so lonley. I know it will pass, I go through stages. I just wish this rollercoaster would stop. I want off. I will go to the chat room RSDandyou.com I hope I can learn from other people and hopefully make some friends.
Hang in there, you are not alone, and it will get better.
You and everyone else that suffers from this is in my thoughts and prayers.
Kellum

[G0J0G0]

Hi Kellum,
I think you will enjoy your visit to the RSD site before mentioned. I visited earlier this year and quit looking for a support site, may you find the piece and support you need and deserve. I know things are not pleasant with the diagnosis (DX) you have been handed and life hasn't been the same since. But remember that there is always tomorrow and that will be a better day. There is chronic pain associated with this and it is always a heavy load to bare, but remember there are always people that will stand in there with you to help shoulder the load. I have been living with RSD for two years almost to the month and the early days were laced with confusion, depression, and absolute uncertaintity. I find Peace in trusting God's Love revealed through His Son to carry me when the road gets too difficult. He has promised to never leave me or forsake me no matter what the circumstances. Some think of this as a crutch, not so, it is a life support system that makes my road travelable and the journey with less madness and confusion. I try to imagine the horror facing this without the Peace that transcends all understanding and the thought keeps recurring of trying to find my life from childhood to and through adulthood without the love of my parents. Obviously one could likely not make the journey succcessfully and if one could physically, there would be certain mental and spiritual issues of longlasting implications. All of this to say you are not alone, you don't have to go it alone, and when and if needed please call on a willing set of ears or shoulders to assist you. And to anyone else reading this whose road is to difficult to travel, please know there is a Friend that stays closer than a brother and He wants to assist you in everyway through every set of circumstances. The only thing you need is trust and a faith in knowing as said before He will never leave you, forsake you, or leave you lacking. His Love will reach further than you can travel and sustain you and any burden that you may be shouldering. Don't lose sight of that Hope that stands as a light house on the shore line piercing through the stomiest darkness that you could imagine and in trusting in this you will never be the same and you will be able to look at your life a renewed hope and ability to walk as never before. Be blessed all, gojogo...